TOTAL COLECTOMY PART 27

Hii all,

Yeah, the ileostomy bag in and of itself is absolutely no big deal IF the stoma is made correctly and located correctly on your body. The idea is so that it protrudes enough to be like a little faucet so it sticks out enough so that poop drops into the bag. I weighed 99 when the stoma was made. Now I'm 135. I don't want to gain anymore as weight gain can change the function of the stoma I've heard. If you get the right products that agree with your skin and you get a good seal on your skin, nothing leaks and you have no accidents. 2 years, 3 months and SO FAR no bag accidents. Wrap wood.

If done laporoscopically, an ileo surgery would not produce as many gut adhesions as if done open. That would be my only concern for anyone having any surgery (but only because of my specific experiences). Some people never have any adhesion issues. So, yeah, life with a bag definitely OK. I've traveled a ton and can swim, and do anything I used to do. I do need to avoid those mashed potatoes though (they were even instant, easier to digest) and I still got a food clog behind the stoma. Eating with an ileo stoma is definitely trial and error. You need to drink lots and lots of water to keep stuff gushy so it can exit the stoma easily. That's my understanding anyway, Rosemary

Thanks Rosemary,

My doctor said he didn't think I'd need a bag, but I don't think he truly understands how miserable I am. I only eat when I'm home or on my way home, so I end up eating mostly at night. This morning we went out with my mom to breakfast and I was miserable until the prune juice started working a couple hours ago. I didn't eat tonight, because when will it come out? I have to go to work tomorrow morning and I've already had my prune juice, and I don't want to take more. I hate to complain, because it could always be so much worse, but it is miserable.

My biggest reservation about the bag is just the fact that I'd have one. I had both breasts removed 10 years ago, and have implants, but it's not the same. It just scares me to think about having an ileostomy too. My poor husband is so understanding, but I'm not sure how I'd deal with that with him. He says it wouldn't matter, but I feel like it would. Does that sound vain? I don't mean to be, but I do think about that alot. Then when I can't poop I say the hell with it, I want one!!

Janie, I am so glad you are getting some relief. I have been searching and searching for an article that I read about laxatives...GRRRR, I didn't bookmark it...anyway, there was a commom laxative that works best on the small intestine....but, I can't remember which one??? I will keep looking.

As far as me getting a bag, well, doctor #2 mentioned it at my appointment with him. He said he would do a temporary loop ileostomy to see if this would relax the rectal muscle and allow me to evacuate normally. He said people like me with 2 problems, colonic inertia and the outlet issue typically do not have good results with the biofeedback...he said the best way to test this theory was to have the botox injection....he said if this helped, then biofeedback would probably help...but, if the botox didn't help, then the biofeedback had less than 25% chance of helping. I have also had the outlet problem for years, since I was 19, I am 39 now and the longer that you have the outlet issue, the less chance anything will help. I mean, it wasn't as severe as it is now, but I had to disimpact pretty regularly since I was 19, but I could push down then....I have only had to disimpact 100% of the time since 2005. He is also the doctor that said I couldn't have a total colectomy until the outlet issue was fixed. So, I will see him again December 28th to discuss all options.

I obviously research all the time and I read this tonight... placement of a NG tube after abdominal surgery should be strongly discouraged because patients without an NG tube actually had a faster return of bowel function while experiencing fewer pulmonary complications! Maybe this is why not all doctors place them after surgery.

I also read that the risk of total intestinal inertia after total abdominal colectomy with ileorectal anastomosis is significant and all patients should understand this. Does this mean that the inertia spreads? It makes me wonder if the colonic inertia has been spreading through my colon all of these years since my constipation has gotten so bad that I can never have a bm without the use of laxatives??? Or has my colon been ruined through the use of laxatives? It looks like the jury is still out on this since 50 doctors say I caused my colonic inertia through laxative abuse and 50 different doctors say that recent research shows that this is not the case. But, I truly believe I did not cause my colonic inertia because I have read over and over again that true colonic inertia is RARE! Laxative abuse is called refractory constipation and I have ALWAYS been constipated, even as a child. And my colon is not brown or black because I have never abused stimulant laxatives.

Ok, I am rambling, but reading all of these different things makes my brain tick!!!

Hi everyone,

I hope to be going home tomorrow. They started me on solids today. I ate a few bites of grits for breakfast, half a piece of grilled chicken, a few bites of mashed potatoes, two green beans, and half a roll for lunch, then half a bowl of tomato soup for supper. I have been able to go all day. I really don't have an appetitie and eating was very difficult, and I really don't feel well after eating. The lunchtime meal was the worst. I really felt bad after that. Now that everything has passed I feel better. They are fussing at me because I am not drinking enough. They took the IV away this evening. I am just not a big drinker so that is something I will have to make an effort to do.

When I get home I will be able to control more what I eat and I guess do the trial and error thing. They weighed me and I am at 105-106. I am 5'6" so this is not a healthy weight. I am afraid I will lose more before I start to gain back.

Well hopefully the doctor will come in in the morning and say you are outta here. I am so ready to see my kids. I missed trick or treating and the church trunk or treating so that really bummed me out. That is something that is just fun to do as a family. I hope I am able to surprise the kids and be with my husband when he picks the kids up from school tomorrow.

Thanks for everyone's support. I am sure I will be seeking advice during my recovery. I am going to try to catch up on everyone's posts when I get home.

Jen

Here is an explanation...check out the last sentence...I don't qualify for this either. WAH WAH

The most usual reconstruction after subtotal colectomy is ileo-rectal anastomosis, which requires the removal of the caecum. We propose the treatment of chronic slow-transit constipation with subtotal colectomy and antiperistaltic caecoproctostomy. The sparing of the caecum, the ileo-caecal valve and the distal ileal loop, leaving a physiologic reservoir, allowing the presence of colic bacterial flora which metabolizes the undigested starch and produces short chain fatty acids, should guarantee a normal stool consistency, normal absorption of water, sodium and vitamin B12 and the prevention of renal and gallbladder lithiasis. In 1992, we started a study on the outcome of 19 patients who had undergone subtotal colectomy and antiperistaltic caeco-rectal anastomosis for slow-transit constipation. The surgical procedure was carried out without any serious complications and without mortality. The mean clinical follow-up was 64 months (range 5-132). Six months after surgery, 13 patients reported normal bowel movements with solid stool consistency, 5 reported diarrhoea and the need for antidiarrhoeal agents, and one reported constipation easily controlled with laxatives. Fifteen patients considered their quality of life as having improved compared with that before surgery. Selection of patients justify such very satisfying results. It is well known that colic resection is effective only in the case of slow transit constipation, and thus a careful physiologic assessment is needed to rule out other causes of constipation, such as outlet obstruction syndrome.

Jen I hope you get to go home, but dont rsuh if you still feel sick. I would maybe ask about some megace which is anappetite stimulator. for your height your about 30 lbs underweight honey....and i know yo uknow this is not healthy. I am so happy for you and praying for tomorrow to be even better.

Amey- See I do not have but burn or irritation (which scares me) so MOM works best for me. Tonight I ate a half of cup of chicken and white rice and half a piece of garlic bread. The most I have eaten all week and I did not vomit, but felt likt i was going to. It was also the first time I experienced the rectal pain and pressure. I have never had this since surgery.....what do you think this means? I am very down tonight.

Janie and Tracy- I agree with Rosemary and Amey that living with a bag is tolerable and for some not that bad, but like Amey said I had a horrible experience. I had leaks, skin break down, retracted stoma, open surgery, and etc but i did poop. But I also had to be very careful becue I would get obstructions easily even with my ileo. I had a hard time emptyinng it if it was too thick. I am OCD and would rinse my bag each time and always felt insecure. This extemely affecyed our sex life....the bag was a major hinderance to me not to him. I am not discouraging it, but like you all I was ready for it and then I had it and i wanted to pull it out....you get used to it, but i had  to be honest with all of you. Sorry MOM hurt all your bums.

I donot know what to do or think. I see my surgeon Friday....there is no way I can go back to work like this and this is making me hate this whole situation for all of us. I really wish we could plan something where we could all mett and raise money for Hodaya to fly in from Israel or anyone else out of country.

Love you all.

Lizzie

Hi Jenise,
I understand your quandry about whether to have surgery or not. In all the research I've done I've come up with so many conflicting opinions presented by experts. If I'd taken 2 years off to learn all I've learned in my case review, I know I would have just treated my original 2006 issue medically and would not have gone down the road I did. What I've learned is that even the best of the best doctors don't have a definitive understanding of the nerves/muscles of the pelvic floor. Most go with what they can see on imaging such as structural issues. Very few test for nerve disorders which may make fixing the structural things ineffective or worse. In the case of colonic inertia (which I didn't have), this can at least be evaluated accurately by transit studies. So even docs who are sincere about an honest evaluation, may not understand the whole scope of things. In my research I've found that Dr. Bruce Orkin of George Washington University Medical Center in Washington DC seems to have the best grip on the full scope of things that can make for difficult bowel evacuation. Had I known of him, I would have gone to him in 2006.

But yes, my current surgeon is a gem, one who is in medicine to save lives. Did restore my faith in the medical profession.

In answer to your question, about tests for adhesions.....if a person is having a small bowel obstruction from adhesions, plain xrays can show uneven distribution of intestinal gas on xrays of the person lying down and standing up. xrays need to be done in both positions. If there is an uneven distribution of gas in the intestines the next step is a CT scan. This is the gold standard. A third very invasive test which I had to have to locate the adhered small bowel loops is a CT entercolysis test. This is a long NG tube put down into the start of the small bowel from the nose. Then gastrograffin is put down the tube and then xrays are taken. It is horrific. Mayo Clinic said I stayed the most still of anyone they ever did this too. I said I was determined to find the trapped small bowel loops so they could be freed and get my life saved. I had to literally be wheeled out of the test, it was so awful, though the techs were wonderful.

In your case, as you are not having small bowel obstructions, but rather a pulling sensation at a less deep level, maybe abdominal wall adhesions(?) Laporoscopy would be the only way to diagnose your type of adhesions. I just put the rest of the info in my answer in case anyone else was wondering the total number of ways to diagnose pelvic adhesions. I personally believe that warnings of these should be put on every consent form for pelvic surgery. I do not yet know of any surgeon who warns his or her patients about this. Pelvic adhesions can cause pulling or pain sensations or can cause the small bowel obstructions that can potentially be fatal.. One of my projects I'm working on is to work with legislators to get this added to consent forms. Dr. Steve Wexner from Cleveland CLinic and a few other colon surgeons are lobbying for the same thing. Kudos to them for doing so; they sound like honest docs. Rosemary

Jen, i'm glad you feel you can go home, but as Lizzie said, don't rush it if you still feel sick. but after all, if you're eating and going to the b/r, then maybe it's o.k. sounds like your progress is good and that's wonderful. take it slow with food, don't load too much on your system too soon. maybe you can add some ensure or something like that to add some calories and put on some weight. my dr was so concerned about my weight, but you know what?? i'm already back to my normal weight - 115 lbs and i'm just 2 1/2 mons post op. hope you feel good enough to eat and don't get nauseated. one best way to gain weight is eat lots of icecream. it's not to harsh on the digestive system and make you gain real fast. i sure don't need icecream anymore.. lol. Janie, you know, for the last few days i was starting to think about having a bag too... OMG i started to imagine in my head the hole script and how my life would look like. i cry a lot lately, cause i'm disappointed things are not the way i hoped they would be. i'm not doing so great.. it seems i'm slowing down and am very limited with what i can eat.. :( Lizzie.. you're a doll, how sweet of you to think of raising money for me to come over to U.S.A. to meet with all of you wonderful ladies. i would absolutely love to meet with all of you, but it seems so far fetched right now, doesn't it?

I just heard back from my doctor - but not a great deal of information.. all I know is that surgery is once again on the table, but he is booked until after Thanksgiving. That's a bummer, because I feel I will not be in great shape for Christmas. No sense in cleaning my house from top to bottom, because I'll have hubby and son home for days at a time... Not the ideal timing for me, but I have to do during this insurance year as I have met all my out of pocket expenses, and don't want to start over forking out another $4000. sigh... I hope it all works out for me. I don't even know how much colon he plans on removing, because the barium enema revealed more stuff (prolpased transverse). I did email him back saying I don't want the whole thing removed if at all possible. I rather give it a try leaving some.. and if I have to take something forever, I'm okay with that. I just don't want the same issues as some of you (most of you) have! I do want to eat and enjoy life... and not worry about not leaving the house at times and such.

Tracy, sorry sweetie you have a bladder infection, they are not fun. So when you had the Sacral colpopexy - you kept your uterus? I had a hysterectomy and just kept my ovaries, but I did have the TVT bladder sling. At first - it was an issue, and after 3 weeks with a catheter, I had to have another surgery to release the sling! (I could not pee at all.. only a few drops) but since that release, my bladder has been perfect! No leaking, no straining to go, and although I have an "overactive" bladder, it is better then it was. That is one surgery I can say I'm glad I had.

Hodaya, DARN IT! I hate to hear that things are not perfect with you! I want so bad for all of you to just get better, so I can follow in your footsteps!

I really hate the idea of right after Thanksgiving.. and I hope I will be feeling pretty good by Christmas..?

Jenise,

Looks like we were writing at the same time! Good luck with your surgery. If your surgeons think you need it, then you have to trust them. What exactly are you having done?

Jenise, i wish things were perfect for all of us, but unfortunately having outlet problems will always cause issues. Janie, i hate these tiny bits b/r trips, i too get horrible butt burns from that.. pls make sure you put some good butt cream after every bm, you don't need a fissure or anything else nasty. well so tired, so i'm off to bed, night. hope today is a better day for all of you!

Jenise,

I passed my defogram before surgery. There was only a slight delay in emptying, but it all came out I had a small rectocele (still do) but my doctor said the colon inertia was the biggest reason I couldn't go. I flunked the sitz marker test, 119 out of 120 were still in my colon and only a few near the rectum. I think one of the other tests showed outlet disorder, but my doctor didn't feel it was too bad.

Like you, I hadn't/haven't had a normal bm in years and years. I used senokot since I was 20 years old. I was having so much trouble going then, and a GI told me to take senokot. Over the years I went to Dr. after Dr. and they all recommended I keep taking senokot as long as it worked. I had my first sitz marker test 20 years ago and failed it then.

My last defogram last week showed much more delay in emptying and I could only get 1/2 of the paste out. I have no idea why it's gotten worse.

I've taken miralax for 3 days now, and since dinner I've gone a few times, all liquid but at least something is moving. I haven't had any prune juice and I don't want to if I can help it. I'd love for the miralax to work. I really don't care about how many times I have to run to the bathroom at this point, I just want to go!

I've always had to strain, too...even with the senokot. Sometimes it would just blast out, but more often than not I'd have to strain. I'm sure that's why we have rectoceles!

Amey,

I have a question for you, and maybe you've said before but I didn't see it. If you had an ileostomy because you couldn't go after your colectomy, why did you have your ileostomy reversed? Was your ileostomy supposed to be temporary? I thought you said you expected to have it for life. Does your doctor think things have changed? Just curious, and maybe hopeful if I have to go that route.

Lizzie,

How are you doing?

janie

Jenise,

If you can, try to find out exactly what will be done during surgery and why, what test result indicates necessity for what portion of the surgery. Try to get them to be as specific as possible.

All of my defecogram radiology reviewers for my medmal case said I did not have the sigmoidocele that I was operated on for. But then one of them went on to say that if perineal ballooning is present in a defecogram this my hinder the success of any structural corrections that are made even if they were truly needed and were done correctly with good surgical outcome. (I think perineal ballooning is when the muscles are stretched out and the actual quality of the muscle can't be fixed.) He ends his letter saying, "This is a complex area and there is a lot of disagreement about what causes what, especially between urogynacologists and colorectal surgeons." (He sure hits the nail on the head, doesn't he?) Good luck, Rosemary